DS with ASD starting school Sept 2018 - I am feeling overwhelmed

[Hurricane74]

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

Not really Sue. It’s taken quite a while to arrange regular sessions for him. Apparently yesterday’s session went well and he played a number of games with her. I think he must feel more relaxed at nursery as it’s less like all eyes on him (even though it is) and more like someone going in to play with him. Hopefully we’ll see a benefit in time though I guess with no formal assessment it will be harder to see progress as no benchmark to measure against. Maybe it’s something we can consider once he’s more familiar with her.

Light when is your dd’s nursery visit? I hope that goes well.

It's tomorrow!! She told me today that she doesn't want the lady to come and she feels shy when there is somebody new in nursery... But the lady was very nice and DD warmed up to her quickly at the ADOS so hopefully once she's actually there she'll be fine... Anyway, out of my hands so we'll just see what happens!

Hope today goes well for your dd light.

We have to take our ds to his new school this evening so he can meet the teachers, taste the food and see the classroom for the first time. I am absolutely dreading it! I spoke to the head teacher about it already and she seems very nice and understanding (as you would hope) but I'm just hoping we can get through it without a melt down. Having said that the school is literally on our corner so if it all gets too much we can just take him home.

Hope the nursery visit goes well light

Thanks Sue, Liv and Open! Dropped her off this morning. The lady was already there and when DD spotted her she was immediately rooted to the spot and looked away. I managed to distract her with asking her to show me her book corner and we went to find some caterpillars that they have had in the classroom, and eventually she went to a table with some toys and started playing happily enough, so hopefully she'll settle in OK. The lady is going to speak to her current teacher and her old teacher (who DD loves and was a great support to her when she was still in the downstairs nursery), so hopefully that will give her a good overview of what DD is like regardless of whether or not DD is on top form this morning!

Hope your school visit goes well this evening Liv. Evening seems a bit tough as they are so tired by the end of the day aren't they? But the fact it is so close to home is great. Fingers crossed.

LightTripper it’s great that your dd can express how she’s feeling. I’m sure she settled down fine. Do you have a date for your review meeting next week? You must be on tenterhooks.

livpotter I hope your visit goes well this evening. Is this for school in September? I agree, it’s a tricky time of day but needs must I guess. Great that it’s so close.

Because we’ve chosen the school in the next village vs our own village (we’re on the edge of a town) our school will be 1.7 miles away. Not really walkable for a young child so we’ll have to drive and try to find somewhere to park! It’s a relatively small school (about 150 students) but parking near the school is limited.

Thanks Open Yes for school in September.

So there was a speech bit at the beginning was difficult as ds was being noisey and shuffling up and down the hall on his hands and knees 🤦‍♀️ BUT afterwards he really enjoyed the classroom and I had a long chat with the deputy head, who deals with all the inclusion stuff and she was massively reassuring. So feel pretty good about it.

Hope the rest of your dd's nursery visit went well light.

Well that’s encouraging and must be a weight off your mind. How verbal is he? Sorry, I’ve read the thread but can’t remember all the details. What are your main concerns for school?

Was this a session just for you or were there others there?

I have my second SEN parenting course tomorrow. Hoping for a bit more practical advice. Ds has been signed off the playgroup that he’s been attending for the last 10 weeks - it’s offered in 10 week blocks. Not all targets were met entirely but he’ll be attending a more structured one run by the same person for 8 weeks across June and July which will hopefully be better as school preparation. We also go to a SEN playgroup run monthly on a Saturday at a children’s centre not far away. They are hoping to run a series of 4 weekly school simulation/practice sessions over the summer which sounds good. I’m sure it will be open to all children, not just SEN, but hopefully ds will do ok.

Yes massively encouraging. He's partially verbal but getting more and more words. Still can't make sentences but by September who knows?! His main problems are speech and sensory but I really got an impression from the school today that they will be very supportive. It was the gut feeling I had when I first visited so finger's crossed it turns out like that in September!

It sounds like you are getting involved in lots of good things open. I hope the parenting course goes better this time.

The school sounds good liv hope you're feeling more relaxed about things. Hope the parenting course goes well open the specialist nursery and play sessions should really make a difference.

Yes I feel really grateful for that open - though I think things can get muddled. So before Christmas any time she was sad if you asked why she said it was because her Grandma had died, although often you knew something else had happened to throw her off balance. More recently if she ever feels sad/anxious/tired she tends to say she is missing me ... but she happily waves me off when I drop her at school! She tends to say she is "shy" when I think it's probably a kind of overwhelm... but in any case, it's good that she has some words to describe it even if they are a bit vague and you still have to do some detective work!

Really hope the second step of the parenting course goes well. If we do get a diagnosis next week (we are going in on Thursday) I'll have to find out if anything like this is available for us ... but hoping it is useful. It's hard for them though isn't it, as I feel like I've spent the last year reading the entire internet on autism and watching any YouTube video I can find by autistic adults and children, whereas some other people will presumably be there for whom it is all totally new - so it's hard to pitch it so it works for everybody. Also as our kids are all so different and have different kinds of needs (even from month to month for the same child, even leaving aside differences between children!)

Anyway, DD seemed to have a good day at school yesterday. When I asked she said the therapist did talk to her and that she wasn't too shy and did manage to talk back. I suspect she gave no eye contact so therapist will probably mark that all up as ASD traits but it is what it is... we love her the way she is!!

Interested that you mentioned sensory Liv. This is one of the things I find really confusing about ASD. If you ask autistic people or their parents nearly everybody seems to mention sensory issues as a major part of autism - but as far as I can see DSM doesn't mention it and obviously the ADOS doesn't really cover it... so seems to me you could get a dx with no sensory issues at all? DD is very lucky in that she really doesn't seem to have that much. She's a bit sensitive to noise but that seems to be it so far at least. I really want to learn more... I feel like autism is becoming my own special interest!

Thanks Sue.

I'm glad yesterday went well light.

Yeah I didn't know anything about sensory issues at first, then I read one of Temple Grandin's book where she reckons it one of the most important aspects of Autism.
For our ds doing sensory OT had been the main thing. He's massively sensory seeking apart from being over sensitive to light and wet things. He wasn't learning anything after he had his regression until 6 months after we started doing OT, when they finally got him more regulated and taught him how to self regulate. It's been life changing for us and him.
We're lucky we've managed to do it privately because our borough doesn't take OT referrals for children with a diagnosis of autism!
It's funny you say that, I think autism is my special interest too haha!

liv I’m trying, though I know there’s more I could probably seek out. I don’t want to try him with too many new things though and overload him. I’m a SAHM since ds’s birth so I’m able to do these things that are offered during the week, much more difficult if you’re working I expect. The course I’m doing is also offered in the evenings.

Light the course was better this week. I wouldn’t say I learnt a huge amount but we did some interesting exercises and it was a useful overview of communication as a whole and the differences between the way NT children develop in the different areas vs those with social communication difficulties (this is the term they are using as not all of the children are diagnosed as ASD/C). Out of the group of 13 children only 1 is a girl. They are all 3/4 years old. Next week, supposedly, will offer more in the way of strategies and tools to help communication.

You are right, of course, they have to pitch it so that it is useful for as many people as possible. The parents are quite diverse with several having EAL, differing educational levels etc. I was most disappointed because it was ‘the’ sensory talk apparently. Maybe aspects of it will be touched on again later. We shall see! I thought it was interesting that at least half had not watched the short YouTube videos they recommended and hadn’t completed the ‘homework’ sheet, which was a small exercise.

I think it’s important, if you can, to take advantage of everything that’s offered to you. I think it goes a long way with the LA and is a positive for EHCP applications etc. if parents are seen to be doing all they can. At the moment we haven’t mentioned any of the private help we’re getting because I’m worried it will be used as a reason for the LA not to provide anything. I’m not sure if it’s the right approach.

I guess I can understand YouTube is quite alien for some people (though I have learned to love it as it is such an amazing resource for first hand experience from autistic people and parents!) but it's hard to imagine why you wouldn't do the paper sheet - unless it is a language issue... Good point about how it "looks" to the LA etc. that you have done everything you possibly can on your side.

Still feeling OK about Thursday. Suspect it is denial. I know I will find it very hard if she is given a dx. But it will probably also throw us into disarray if she isn't (where do we go from there? Just act like it never happened??? that doesn't really make sense). Trying to put together a list of questions to ask that will be relevant whichever way it goes and whatever the ADOS score.

For those with a Dx already - anything you asked and were glad you did, or forgot/didn't think to ask and wish you had?

Open I'm self-employed but I have had to limit my hours so much now because of ds that I'm essentially a SAHP.
To be honest I don't know what the right thing to do is. We have the LA everything including all the private reports. The EP who assessed him said it was incredibly useful as she had a pretty good idea of difficulties before he saw him. I think what you don't want is loads of really positive or conflicting reports, as they can cause problems. I know what you mean about giving the right impression though.

Light I wish I'd pushed them a little harder on his strength as weaknesses from their point of view. I also wish I had taken some notes so I could remember what they said properly. I think I was so overwhelmed with relief I pretty much forgot everything. Ihopeot goes ok for you on Thursday.

Light I was too thrown off to ask anything to be honest. We weren’t expecting to get a diagnosis so quickly and I was just stressed out by the whole thing (ds refusing to co-operate etc). They told me they wanted to see him again in six months (we have the appointment through for end of June) and he was already under our LA’s Early Help programme where we had discussed all the things we’re doing now (EHCP, groups, course etc.). Even if we hadn’t got the dx these would have gone ahead based on need.

Definitely ask what is available in your area regardless of the dx - presumably there was a reason she’s been referred, social communication issue or whatever it was, and those issues don’t just magically disappear. If she doesn’t get the asd dx then use what you’ve learnt from all your research to parent her accordingly in relation to her asd-type quirks. All that information will still come in really useful.

Liv we don’t have any reports from the private SALT or OT yet so only really strategies to share so far. Hopefully the ed psych doing the assessment for the EHCP will have access to all the information that’s already been submitted, it’s quite comprehensive.

I’m a bit delicate today. I finally watched the Chris Packham documentary last night and found it interesting and useful but also very sad. Ds’s sleep has been bad again over the weekend - up before 4 yesterday, 4:15 today so he’s super tired. He refused to leave nursery when I picked him up, having wanted to go home while he was there... I had to carry him to the car where he refused to get in his seat while he’s tantrumming. Car was hot etc. Eventually found something that worked to distract him on my phone and got home. I’ve cancelled plans for this afternoon as, in my experience, days like this do not improve if I try and push him to do more. Really hoping it’s just a blip and we don’t have another three months of this like last time

Sorry you're having a difficult day open. Good idea to have a quiet rest of your day. Hope you both get a better night's sleep tonight.

I found the Chris Packham documentary a bit of a hard watch too though there were some lovely bits. I loved the relationship with his step daughter and his girlfriend seemed really cool. Bad to judge his happiness by my (pro-social) standards though. Not that I see my friends a huge amount but I love knowing they are there! I suspect if i was a dog person I would have found it an easier watch as his relationship with his dog seemed really special but I just find it hard to relate to that fully. I also loved the way he has been able to follow his passion though, and the fact that despite his quirks he found some mentors who recognised that and helped him get to where he is today. I think that is a really good lesson: not to worry too much about what your child is interested in or how they express it, but just to go with it and give them whatever resources you can to pursue that interest! But also gives some hope that there are some good NT people out there who will go out of their way to help shepherd somebody a bit quirky and different and help them get to where they are meant to be.

If DD doesn't get a dx (though I think she will, realistically) I definitely still plan to use all I've learned. Her traits are still her traits, whatever label is or isn't put on it. But I suspect that would feel less like closure than an ASD diagnosis (because what if she faces more problems later and we have to go through the whole process again, the whole time she would be struggling?) If she doesn't get a Dx, or if she gets SCD rather than ASD, I will definitely ask about circumstances under which we could revisit that and what the steps would be, in case she hits more problems later.

Lack of sleep is so tough. Luckily DD has always been a pretty good sleeper in the scheme of things but because we found out she was probably autistic when DS was newborn I remember trying to process everything and help her when I was also massively sleep deprived and it is just crap. Really hope DS's sleep recovers again quickly. The change of seasons is never good is it?

The bits I found toughest were when he talked about being suicidal, bullied and not fitting in generally. Watching the old footage of the girl in ABA therapy was pretty awful too. I appreciate it has moved on since then. The step daughter at the end came out of the blue didn’t she! What a lovely relationship they had and he had clearly inspired her immensely.

Open you must be exhausted after such an early start and then challenging behaviour.

We have an appointment with my son’s Endocrinologist tomorrow (about his growth issues). Not quite sure why but it’s normally stressful - at our last appointment the consultant locked the consultation room with a key to contain my boy - she clearly thought that my parenting skills were lacking. Fingers crossed tomorrow is easier.

5:30 today, thank goodness. That’s about his normal, plus he went to bed earlier so he’s had a decent sleep. I kept waking thinking that I heard either the boiler or his feet on the hall floor. Why do our minds and bodies sabotage us?

Dimples I hope your appointment goes well, sounds like we have similar experiences at these appointments. We had to lock the door at ds’s hearing test last year. Luckily he settled down once he became intrigued by their equipment and toys and did enough of the test to satisfy them that his hearing was fine. He definitely has anxiety in these environments. We have our NHS OT appointment tomorrow and I expect him to not co-operate and just try to leave.

Yes the ABA stuff was awful. Makes you see why people now compare it with gay conversion therapy. Don't get me wrong, I'm all for teaching children skills and I think Discrete Trial methods can be pretty good for that (we've found breaking things down into tiny steps for DD and practising one at a time - or practising with us first, then with other adults, and only then with peers) has worked well. But really putting a child through that to achieve "eye contact" or not stimming? Feels like something from a previous age yet we know it goes on today.

I had actually blocked out the stuff about him feeling suicidal. Bullied I guess I just take for granted (I was bullied so I always imagine everybody was, though I know that isn't true!) I really hope schools are better at dealing with that now. At least it seems to be talked about and something there is an expectation of being dealt with... though I'm sure the reality is not always that easy/rosy.

Glad you got a bit more sleep open - and DS too! Hopefully he'll be in a better mood today having slept even if your brain didn't let you really get the full benefit of it! DD has taken to coming downstairs recently and I am constantly thinking I'm hearing her when actually it's next door or just some pipes creaking...

Good luck for your appointment dimples.

Glad to read that you got slightly more sleep last night open.

Thanks for the good luck wishes with the appointment. My boy was v good -fortunately it was v brief. We spent more time queuing to get into the car park than in the hospital itself. Sadly no further forward with the growth issues - this was the local hospital but the regional centre are in the lead. The consultant said she thought that the regional team were underestimating the problem. We’re back up there in July so I guess we’ll have to wait and see. It looks like I will be buying size 2-3 school uniform for my son who turns 5 next month.

Having a reunion with some of my school friends at the end of the month - we used to do it annually but I haven’t done it since becoming a Mum. They mostly have similar age children - it really struck home during our group email chats how different we/our lives were. When we were trying to agree a schedule I had to keep asking for changes/ suggesting we opt out of certain activities. I think they all think I exaggerate his issues - he is v sociable and charming to other adults and mostly has it rages at home. Perhaps they will understand better this time when they see him as he has a large bald patch on his head where he has pulled his hair out due to anxiety/sensory seeking.

dimples76 glad your appointment went better than you thought. It must be quite frustrating having to deal with two separate medical teams though. Especially when neither are coming up with any solutions.

It’s tough trying to manage social situations isn’t it. We’ve declined quite a few as we know that ds will just not like it and one of us will have to manage him and not participate or we’ll have to leave early. I’m hoping this will change in time when he’s able to articulate exactly what he finds hard so we can modify appropriately or he can pick and choose things he wants to do. We accept things that we think are manageable or that are with people who get it - with variable success! or one of us will go, the other staying at home. I got slated on another thread for saying that this aspect is quite hard sometimes but we are only 4/5 months post diagnosis, not 4 years. I hope you’re able to enjoy your reunion and that your ds can join in as much as possible.

Our OT appointment went as expected. Ds was very stressed and did not want to stay in the room. He did do one puzzle and drew the first letter of his name (this is a new thing) because he thought that meant he could finish. Dh did then take him out of the room to calm down and I chatted to the OT. They will send some info, hopefully it will be helpful but they won’t offer more than that. We will get a report that can be used for the EHCP assessment but thank goodness we have our private OT who can work with him at nursery rather than a clinical environment. Going was just a box ticking exercise really.

I just commented on another thread where I felt someone was getting a bit of a hard time for feeling sorry for themselves - we're all only human and I think as long as you don't let the negative thoughts takeover it's not a problem. I have found this thread really supportive. Guess I just feel a bit sad because some of these friendships are 30+ years old and I would have hoped that they would have been more supportive.

Sorry that your OT appointment wasn't much use open. As you say though at least you are one more step along the road.